Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Do they provide any kind of medical care or follow-up? On 8/5/04 6:10 PM, " ceda " ceda > wrote: > > Subject: Re: NIH > > Stacey, > > The NIH is the National Institute of Health in the U.S. They are doing a > study involving people with EDS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Do they provide any kind of medical care or follow-up? On 8/5/04 6:10 PM, " ceda " ceda > wrote: > > Subject: Re: NIH > > Stacey, > > The NIH is the National Institute of Health in the U.S. They are doing a > study involving people with EDS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 From: Laxity To: ceda Sent: Thursday, August 05, 2004 10:40 PM Subject: Re: Re: NIH Do they provide any kind of medical care or follow-up? ************************************ I'll know more after we attend, but so far what I have been told is that you are there to help them learn more about this syndrome. If they find a problem as when ~Lonestar~ went. They will treat it. She had an unknown urinary infection and they treated it. If they know of a treatment to help you, they talk to your Primary Dr on the phone to tell them what can be done. You will get a written report 8 weeks later on your test results. For this particular research study we go 3 times in 5 years. We can drop out at any time and refuse to take any test we feel we want to refuse. NIH does treat patients, but not through these studies. Perhaps S. could explain how that comes about. She goes there out side of a study group. In this study they want to know more about the heart, bones and pain of EDS, Marfans, Sticklers, and other related connective tissue disorders. Hopefully I can answer these questions better when we get back Aug 18th. So why am I doing this? ... For his future, my grandkids futures, all of us. And of course in hopes that they will know of something to help us now. Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 From: Laxity To: ceda Sent: Thursday, August 05, 2004 10:40 PM Subject: Re: Re: NIH Do they provide any kind of medical care or follow-up? ************************************ I'll know more after we attend, but so far what I have been told is that you are there to help them learn more about this syndrome. If they find a problem as when ~Lonestar~ went. They will treat it. She had an unknown urinary infection and they treated it. If they know of a treatment to help you, they talk to your Primary Dr on the phone to tell them what can be done. You will get a written report 8 weeks later on your test results. For this particular research study we go 3 times in 5 years. We can drop out at any time and refuse to take any test we feel we want to refuse. NIH does treat patients, but not through these studies. Perhaps S. could explain how that comes about. She goes there out side of a study group. In this study they want to know more about the heart, bones and pain of EDS, Marfans, Sticklers, and other related connective tissue disorders. Hopefully I can answer these questions better when we get back Aug 18th. So why am I doing this? ... For his future, my grandkids futures, all of us. And of course in hopes that they will know of something to help us now. Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hi Cindy, How your travel to NIH is safe and comfortable on Monday. (Tuesday?). I would love to talk with you before you go but I guess we won't get to that. I am still hoping to have lunch with Dr. F. when I finish at Hopkins with her old asst. I really hope that she can offer something helpful for you all. They are so very nice there. Tell Dylan not to worry. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Hi Cindy, How your travel to NIH is safe and comfortable on Monday. (Tuesday?). I would love to talk with you before you go but I guess we won't get to that. I am still hoping to have lunch with Dr. F. when I finish at Hopkins with her old asst. I really hope that she can offer something helpful for you all. They are so very nice there. Tell Dylan not to worry. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Thanks , We leave the house at 2 PM tomorrow. I feel real good about the trip. My gut says this is where we need to be to get answers. Yes getting to talk to you would be nice, I have allot of questions, but I guess I'll find out everything when I get there. Is there anything you want me to pass along when I see her? Cindylouwho Re: NIH Hi Cindy, How your travel to NIH is safe and comfortable on Monday. (Tuesday?). I would love to talk with you before you go but I guess we won't get to that. I am still hoping to have lunch with Dr. F. when I finish at Hopkins with her old asst. I really hope that she can offer something helpful for you all. They are so very nice there. Tell Dylan not to worry. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 Thanks , We leave the house at 2 PM tomorrow. I feel real good about the trip. My gut says this is where we need to be to get answers. Yes getting to talk to you would be nice, I have allot of questions, but I guess I'll find out everything when I get there. Is there anything you want me to pass along when I see her? Cindylouwho Re: NIH Hi Cindy, How your travel to NIH is safe and comfortable on Monday. (Tuesday?). I would love to talk with you before you go but I guess we won't get to that. I am still hoping to have lunch with Dr. F. when I finish at Hopkins with her old asst. I really hope that she can offer something helpful for you all. They are so very nice there. Tell Dylan not to worry. Take care, Quote Link to comment Share on other sites More sharing options...
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